I did get my opioids to treat my severe, disabling chronic secondary pain

It cost me well over $150 and three wasted days of stress, anxiet and insecurity.

As a refresher, I am on long term opioid therapy for severe, disabling pain due to rheumatoid arthritis, severely degenerated spine including cauda equina syndrome, and chronic inflammatory demyelinating polyneuropathy and extremely painful peripheral neuropathy.  I see my GP every four weeks for a prescription for 20mg of oxycontin (slow-release oxycodone) and 10mg of oxynorm (immediate release oxycodone).  This month, I showed up my appointment and my GP was away sick.  The whole story is here.

On the Monday I arranged a telehealth appointment with my regular GP.  It took the best part of the day before I knew it the appointment was secured. 

During that appointment my GP told me she had covid, but was well enough to do some phone appointments, from home, to help her patients who were in similar positions to me.  She had holidays booked for all of November and had unfortunately gotten sick in the weeks before she went on leave, she had several patients who needed scripts and review.   I needed to talk to her about several issues, my blood pressure, some recent bloodwork, but given she was unwell, I decided to leave that until next month.   I focused on the scripts, and nothing else.

My GP was frustrated, but not with me.  And heck, she wasn’t feeling well, can’t blame her for being annoyed that she had to work, that she had to resolve these problems because her colleague refused to.  She stressed that I would need to be reviewed with my new pain management doctor.  This situation had called attention to my opioid use. 

Great.  

She sent me the e-scripts, I thanked her for working when she was ill, wished her a fast recovery.  

My GP is great, and none of this is her fault. 

I went to the pharmacy and was asked to wait because the pharmacist wanted to speak to me.  She was concerned that I had seen two GPs for my opioids, and I had two separate scripts. She wanted me to explain.  Which I did.

She gave me a mini lecture that seeing different GPs is a red flag, and to make sure this didn’t happen again.

I put that smile back in my voice and told her of course not. This was a one-off situation, an unlucky set of circumstances.

She had no empathy.  Didn’t crack a smile. She told me she could only give me half my script, I would have to pick up the rest when the first half ran out. 

I didn’t bother asking why.  Red flags, obviously.  Now she was rationing my medication.  Watching my use.  The pharmacist had no understanding, had zero care factor about me, and treated me with disdain. 

Stigma.  Discrimination.  Barely concealed distaste.  Opioid user.  Drug seeker.  I almost expected her to say something like ‘we don’t treat your kind around here’.  Or “I will give you these meds this ONE time, but DO NOT come back!”  like the other GP had said.

I can’t pick up the second half of my script until the 10^th of November, they are being rationed to me. That’s fine, but I have significant mobility issues, and can’t always drive. Getting to the pharmacy can be a problem. Obviously, they don’t deliver opioids, too dangerous!  There is a two-day window between when I am allowed to pick up my medications, and when I will run out.  Let’s hope I don’t have a three-day full body mega flare.

While at the pharmacy, counting out the days, I realised that I will run out AGAIN, two days before my usual GP comes back from her holidays.  I will be in the same position again, in less than four weeks.

I then went to my GPs online booking system to book her first available appointment when she was back from her holiday leave.  Yes, definitely two days after I would run out of my opioid pain medications. Again.

I then saw that she had an in-person appointment open up.  I booked it, immediately. 

My blood pressure has been very high.  I had been keeping a log, to discuss with her at my monthly appointment.  The average of my week’s log was 156/98.  Too high.  I am off all my RA meds, and on a high dose of prednisone daily, 25mg.  I am not sleeping more than four hours a night, due to severe pain.  Its not surprising that my blood pressure is very high.   Yesterday I burst a blood vessel in my eye.  I know, this is generally harmless, but in the past this has been a good indicator of very high blood pressure, and I have had TIAs in the past.  I booked the appointment to ask her to restart my blood pressure medication.

She agreed, my BP was too high.  I also asked her about what to do in when I ran out of medication.  She apologised and told me that the doctor I saw had ‘her own opioid prescribing protocols’ but that she could have, and should have, just written my scripts as normal.  She said any doctor could have done that, it was just unfortunate that she was the only option available at the time.  My GP apologised for ‘all the drama’ and gave me the names of two other doctors at the practice who absolutely would write my next months’ script with no issue. 

I thanked her and left.

People on social media had told me that the second GP was lying to me. That of course she could have prescribed.  On reflection, of course that’s correct.  How naive of me to believe her.  I am still so naive, still believe that all GPs have their patient’s best interests at heart.

But of course, I was not her patient.  She felt fine about lying to me.

But logically, there is no way that only one GP can write opioid scripts.  I believed her, because I still trust what doctors tell me.  But now my GP had confirmed that this other doctor had lied to me.  Had so little respect for me, so little care about me or my pain, that she did what was easiest for her.  Treat me coldly, and then lie to me. And tell me to never return to darken her door.

Knowing this only added to the stigma, and the poor-quality treatment I received.  The complete lack of respect that this doctor had for me.  Throughout I have been made to feel that I am a lower-class citizen, part of an underclass.  That I am drug seeking, lying, malingering, faking…it goes on and on. 

Opioid hysteria has created a new underclass for those of us with the most severe chronic pain.

I would have had a lot more respect for her if she’d told the truth.   Even if she hadn’t filled the script.  She should have just said that she does not prescribe opioids on moral grounds, because that is the truth.  She is clearly not keeping up with the evidence, and I would NOT respect her medical skills and knowledge. But I would respect her more as a person if she were honest.  If she treated me with that level of decency.

Nope.  Easier to lie.

I also think its important to add, the main issue is NOT that I was afraid of the pain that might happen, without my opioids.  People always suggest that my pain probably isn’t that bad.  I don’t know why people like to assume this, but many do.   The average healthy person finds it very hard to believe that pain can be constant and severe. 

Please believe it. 

I was not catastrophising theoretical severe pain.  I experience severe pain for several hours every day, because my opioid doses were cut to a point where I only have pain relief for around 12-14 hours a day, leaving me with 10 hours of severe, disabling pain to endure, EVERY DAY.  That is what the opio-phobia in the medical system has done for me.  For the sake of 20MME of opioid pain medication, I suffer severe, disabling for a third to half of my life. 

I am not catastrophising.  This is not theoretical pain.  The pain is always there. The opioid medications reduce the pain to a level where I can function for a few hours, live life for a few hours.  When the opioids wear off, the pain returns full force. It is never gone. 

I know what it’s like to live with this pain 24/7, around the clock. I have had to live this way in the past, and it is truly terrible.  I do not want to go back there.  I don’t think I can.  Especially when it’s not necessary!  When the pain is treatable!  

Why should I have to suffer because other people are misinformed?  Other people have biases and choose discriminatory practice? 

The only reason I am forced to experience severe pain for several hours every day, is because of myth and misinformation and opioid hysteria and opio-phobia. 

Opioids are medicines.  They reduce pain, they do not banish it completely.  They are safe, addiction is rare, overdose is rare.

This whole situation cost me over $150 in extra medical fees that I would normally not have had to pay.  I live well under the poverty line. It has meant that I couldn’t buy groceries this week.  We are eating peanut butter sandwiches again. 

It has cost me three full days of stress and struggle, trying to secure appointments.  It cost me an hour in the waiting room, to teach me a lesson. It cost me a red flag from my pharmacist, and who knows what my Medicare record now says? I did, after all, see a different doctor for my opioids.  This is NOT allowed.  What’s; more, next month I will see a different doctor AGAIN. That will be three different doctors in two months.  What will that look like to the algorithm that decides who’s a drug seeker?  Most certainly doctor shopping!  Another red flag?  More rationed pain medication?

Again, can’t worry about that.  For now, I have my medications.  On the 12^th I will pick up the rest of my script.  And on the 25^th I will have an appointment with another new doctor.  I hope it goes better than it did this month.  Hard for it to go much worse.  But again, not going toworry about it until the 25^th.   No point worrying about things I can do nothing about.

But the stress, the anxiety, the worry that this caused. The time, the money.  The precious energy.  The days wasted, because it took all my upright hours to chase down an appointment or a script.

Its ridiculous. And so unnecessary. And so not my fault.

People living with severe, disabling pain ARE an underclass. And the Australian medical system has made us so. And doctors like the second GP, with her ‘protocols’ have made us so. 

Doctors respect us so little that they would rather lie because that’s easier (for them).  And we don’t deserve the truth, apparently.  I have seen webinars, and learning materials, that actually encourage doctors to lie, and tell people that ‘the government’ won’t allow them to prescribe.  To avoid ‘difficult conversations;.

This IS such bullshit.  If you’re not capable of difficult conversations, perhaps you’re in the wrong line of work.

The doctor is making a decision. They are making a decision to refuse to treat pain.  To refuse to help.  And they are choosing to lie about that decision.  They don’t even have the decency to own their choice. 

They are not keeping up with the evidence, they are relying on myth and misinformation. 

And again, this is why I keep working, keep debunking the low-quality science, and promoting the truth, exposing the lies. 

Opioids are safe and effective long term. 

Addiction is rare.

Overdose is rare. 

Researchers lie.

Opioids are often the only treatment that is effective for severe, chronic secondary pain.  Or pain caused by progressive, incurable, painful, disease that is not cancer.

Please sign our petition against forced tapers on the Pain Patient Advocacy Australia website.

Learn more about opioids and chronic pain on our website.